The Standardized Outcomes in Nephrology – Glomerular Disease (SONG-GD) study is an international initiative to identify outcomes in glomerular disease that are important to patients, caregivers, clinicians and other health professionals. This will inform the development of core outcomes that are important and relevant to measure and report in glomerular disease.
SONG-GD includes a voluntary 15-minute survey to help determine a core outcome set for glomerulonephritis trials, to be taken by anyone who meets the following criteria:
You are 18 yrs of age or older
You are one of the following:
A patient with any major form of glomerular disease*, at any stage of development**
A family or household member of a patient with any major form of glomerular disease*, at any stage of development**
A caregiver for a patient with any major form of glomerular disease*, at any stage of development**
A healthcare practitioner or trainee, social worker, dietitian, pharmacist, psychologist, physiotherapist, researcher, policy-maker, or other stakeholder who deals with glomerular disease
You work in an industry that deals with glomerular disease
CMS has commissioned UM-KECC to assemble 10-20 volunteers for a Technical Expert Panel (TEP) to formulate a process for periodically resetting ESRD clinical quality Star-Rating criteria so that the Ratings continue to differentiate facility quality of care when treatment-quality trends reduce the variation between facilities. Volunteers will include patients, caregivers, ESRD subject matter experts, methodologists, and specialists working on dialysis QI and healthcare disparities. The TEP will require a one-day in-person meeting in Baltimore in June, plus 3-7 conference calls before and after. Nominations must be submitted by April 5, 2019. The current call for nominations doesn’t mention it, but past TEPs have reimbursed travel expenses. For details and nomination forms, see https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations.html#a0305.
Find Conference details at https://www.nwrdonline.org/conference-overview. Volunteers are welcome and appreciated. NWRD includes renal dietitians from British Columbia, as well as the five Network 16 states. There is no NWRD membership fee.